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Out of frying pan, into fire? PMR aftermath
Three months since tapering off. Somehow, I imagined that once off prednisone and done with PMR, I’d go back to the body I had before. I was wrong.
Since prednisone, my knees and hips, as well as other joints have become increasingly stiff and painful. A lab shows no PMR relapse. A knee x-ray has turned up "calcium crystal deposit disorder." From research articles, I learned that it is the third most common arthritic disorder and is sometimes misdiagnosed as PMR. But unlike PMR, it is progressive and can end up destroying your joints. Has anyone else had experience with this?
Once again, I have a “common" disorder that I never heard of and don’t know what to do about.
My doctor has chosen to ignore this diagnosis for some reason and is focusing instead on “osteoarthritis." I think he’s wrong. I don’t know what to do about that either.
Any insight into Calcium Pyrophosphate Deposition Disorder? Also sometimes called pseudogout.
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Yes, my Mayo rheumatologist took fluid out of my right shoulder looking for crystals on 9/2/25. Pseudo gout. He isn’t convinced I have RA/PMR. No crystals at all. Since then he has all but dropped me. No response to my patient portal.
My bones are being eaten away. So much so I had left shoulder reverse total shoulder replacement on 10/29/25. My right shoulder is now in dire need of replacement. I’m on a few other chat rooms trying to get suggestions, etc. This all happened from a shingles shot taken 18 months ago. Doctors don’t believe that either. They think I aged into this. I did not.
Today I will see my Prescott rheumatologist and beg for drugs.
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2 Reactions@susanlf
No pseudogout for me!
I was diagnosed with the real McCoy because I was recently diagnosed with Gout after tapering off Prednisone.
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I successfully had knee replacement surgery on both knees while on Prednisone. You would think nothing could possibly go wrong with my knee replacements. However, my knee pain got worse after I got off Prednisone.
It happened slowly but now I have extensive areas of heterotopic ossification in the soft tissues around both of my artificial knees. Now I have bone in the soft tissues where bone is NOT supposed to exist. They won't remove the extra bone because they say more surgery will make it worse. I'm not supposed to ever have surgery again.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6478587/
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Sometime I need to ask how they know if it is bone around my knees or maybe it might be uric acid crystals from Gout.
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1 ReactionI am so very sorry to read about your issue and pain. I’ll pray you get the answers and treatment you need. Soon.
Off prednisone for a year, my right knee became sore and swollen. Xray show "small fluid". Dr. Google says gout is one of the possibilities but I haven't had the fluid tested yet. So this conversation is very interesting to me.